Re: LDN & Primary Progressive MS

[Guest guest]

Chi,

I'm PPMS and an 8 on the disability scale. I do think LDN has stopped my progression. I was just so far along to begin with. I had no side effects after the ist month of erratic sleep! Go for it!!

Marcie

[Guest guest]

hi

i have spms and am on ldn only 6 days and certainly recommend your husband should try this drug. i live in australia. it is well worth it try it results have been a shock to me happening so soon. i still have a long way to go but initially it has been fantastic. you should give it a go.

raelene

-------Original Message-------

From: low dose naltrexone

Date: 11/11/04 03:38:08

low dose naltrexone

Subject: [low dose naltrexone] LDN & Primary Progressive MS

Hi,I went to see my husband's neurologist today and she told me that we don't have Naltrexone here in Thailand. She said it's up to us if my husband wants to try it but she wouldn't recommend to take it due to the lack of clinical trials. I discussed with my husband and he agrees to try it. So I will order from the website CJ has kindly suggested, www.medsmex.com.The doctor dx my husband with PPMS with Disability Status Scale of 2.5. She said it would take some more time to really conclude if it is PPMS or PRMS. I do not really know if PPMS is the most severe of the 4 types. Just know that most drugs are for RRMS. Although, the progression has been slow, my husband hasn't had any good days for nearly 3 years. He still go to work everyday though.Has anyone with PPMS or PRMS on LDN? Did LDN help stopping the progression? From the reading, it was suggested to try 6-9 months before giving up. For how long did you have to pass thru any side effect (if any) to get good results? I would like to have the info so that my husband doesn't stop it too soon.I feel really blessed to be a part of this group. I hope you all are having a great day!Chi

[Guest guest]

Hi Chi,

I have SPMS for 27 years now and the LDN has helped me. I have been on the LDN since June of 2003. I noticed results right away with no negative side effects. I saw results in my muscle spasms, my balance, my energy, my numbness and I was able to sleep much better at night. I also feel better about myself emotionally. I had an MRI last January and there was no progression. Hope this helps.

Marie

----- Original Message -----

From: Chi

low dose naltrexone

Sent: Wednesday, November 10, 2004 12:07 PM

Subject: [low dose naltrexone] LDN & Primary Progressive MS

Hi,I went to see my husband's neurologist today and she told me that we don't have Naltrexone here in Thailand. She said it's up to us if my husband wants to try it but she wouldn't recommend to take it due to the lack of clinical trials. I discussed with my husband and he agrees to try it. So I will order from the website CJ has kindly suggested, www.medsmex.com.The doctor dx my husband with PPMS with Disability Status Scale of 2.5. She said it would take some more time to really conclude if it is PPMS or PRMS. I do not really know if PPMS is the most severe of the 4 types. Just know that most drugs are for RRMS. Although, the progression has been slow, my husband hasn't had any good days for nearly 3 years. He still go to work everyday though.Has anyone with PPMS or PRMS on LDN? Did LDN help stopping the progression? From the reading, it was suggested to try 6-9 months before giving up. For how long did you have to pass thru any side effect (if any) to get good results? I would like to have the info so that my husband doesn't stop it too soon.I feel really blessed to be a part of this group. I hope you all are having a great day!Chi

[Guest guest]

Hi Marcie my friend

I too found that if we are too far advanced then the LDN has it's work cut out for it.

I thought for a while that I was improving but alas it wernt so.

S.P.M.S is just a way to say Slowly progressing kinda like that glacier during the ice age, but like that glacier there comes a time when it must stop growing and start subsiding.

Well that's what I would like to beleive,that some day my system will say "enough of this already now lets get better"

For those of you that can take 4.5mgs just stay with it I wish I could!I keep trying it but have to go back to 3.0mgs as I get worse every day on the higher dose.Less bladder control, less walking time, less sleep = more stress.

Reg

-------Original Message-------

From: low dose naltrexone

Date: 11/10/04 17:59:47

low dose naltrexone

Subject: Re: [low dose naltrexone] LDN & Primary Progressive MS

Chi, I'm PPMS and an 8 on the disability scale. I do think LDN has stopped my progression. I was just so far along to begin with. I had no side effects after the ist month of erratic sleep! Go for it!! Marcie

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[Guest guest]

Hello Reg,

I am sorry to hear that you have problem taking higher dosage. I am

at the moment on 3 mg, and I have another 3 months supply of it. I

do not know how my body will react to its yet!

Why cannot you try taking 4.5 mg, or 4 mg every other night?

This might work.

Zora

Trinidad

> Hi Marcie my friend

> I too found that if we are too far advanced then the LDN has it's

work cut

> out for it.

> I thought for a while that I was improving but alas it wernt so.

> S.P.M.S is just a way to say Slowly progressing kinda like that

glacier

> during the ice age, but like that glacier there comes a time when

it must

> stop growing and start subsiding.

> Well that's what I would like to beleive,that some day my system

will say

> enough of this already now lets get better "

> For those of you that can take 4.5mgs just stay with it I wish I

could!I

> keep trying it but have to go back to 3.0mgs as I get worse every

day on the

> higher dose.Less bladder control, less walking time, less sleep =

more

> stress.

> Reg

>

[Guest guest]

Hi Zora

I have in the past mixed up my amounts and went downhill as fast that way as with just a steady 4.5mg amount.

For a more slow advance of my symptoms I will stay at 3.0 but thanks for the concern.

You are all real good friends here.

Reg.

-------Original Message-------

From: low dose naltrexone

Date: 11/11/04 15:32:26

low dose naltrexone

Subject: [low dose naltrexone] Re: LDN & Primary Progressive MS

Hello Reg,I am sorry to hear that you have problem taking higher dosage. I am at the moment on 3 mg, and I have another 3 months supply of it. I do not know how my body will react to its yet!Why cannot you try taking 4.5 mg, or 4 mg every other night?This might work.ZoraTrinidad

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Simly said....we are all in it together!

And as strange it may sound, we become all inter-woven!!!!

Special kind of family!

And if somebody is not feeling well in this group it makes me sad

and helpless, and I would like to try to help as much as I can, but

the only weapon I have is to share my humble knowledge, which is

not much....

But you mentioned that you feel better being on LDN, so I hope it is

working for you as well. We all still have plenty hurdles to cross.

Have a nice weekend

Zora

Trinidad

> Hi Zora

> I have in the past mixed up my amounts and went downhill as fast

that way as

> with just a steady 4.5mg amount.

> For a more slow advance of my symptoms I will stay at 3.0 but

thanks for the

> concern.

> You are all real good friends here.

> Reg.

>